One of the things you go through after the diagnosis of autism is a reality check. It’s when reality sets in and you face what your child’s new future is. Everything with your child seems uncertain and all of a sudden and you have to go back and understand that things have changed. The things you thought your child would do may no longer seem attainable. So you sit there and make new plans. You start taking things more day by day and learn what a new normal for you and your family is and will be.
To paraphrase a friend of mine, it’s hard to remember that during this time your child is still the same kid you have always known. It takes some time to look at them and remember they are not just their diagnosis. But slowly things get back to what the new normal is and one day you just can’t imagine a time where it wasn’t like this.
This same thing has recently happened to us with dealing with Alvin’s diagnosis of hydrocephalus. The diagnosis and surgery hit us so far out of left field that honestly it’s just taken a longer time to process what has happened and how it will affect us moving forward. The more I have told his story the past few weeks the more things have hit me. Both W and I are still working to really come to grips with what is currently going on with him and what his future will entail with the diagnosis.
I am an engineer and do my share of analysis and in this case I can analyze all day and never really be ok at this point. I’m ok in front of Alvin and E, but W knows me. I always have the facts and numbers in my head.
The general numbers for the procedure Alvin had (an endoscopic third ventriculostomy or ETV) is a success rate of approximately 80%. So in the first year 80% of the patients that have had this procedure the result is that the drainage of cerebral spinal fluid adequately controlled. The second year success rate is about 78% and the known time that the procedure is most likely to fail is within the first three to six months after the operation. The reasons behind the failure can vary, but the most common is that the hole in the third ventricle either partially or fully grows up and spinal fluid can no longer flow through the path
We know that no matter what, his condition will need constant monitoring by his neurosurgeon and the staff at Seattle Children’s Hospital. We know that for him, contact sports like hockey and football are out for good for the rest of his life. The chance of something happening and his catheter being damaged are just too great with both of these sports. Soccer and t-ball/baseball and gymnastics are all possibilities still but will have to wait until after his next MRI and meeting with the neurosurgeon in July to know for sure. Until this appointment we also have to keep a very careful eye on his incision. We have to constantly monitor it for any separation of the skin, blood or leaking of fluid. If anything comes up its back to the clinic or Seattle Children’s Hospital neurosurgery clinic or ER we go.
So what is Alvin’s overall prognosis? For all the information he has he should be fine. He will grow up learning more and more about his condition and how to manage it. We are working on getting him a bracelet as well to identify that he has hydrocephalus in case something happens and he can’t speak. The condition will never completely go away though. The best thing we can hope for is that for the rest of his life he stays in a constant state of remission where the fluid levels remain normal and all drain paths are working correctly. Could he have more surgeries? The answer is yes. Dealing with this condition means never really knowing what is going to happen. So future surgeries to repair his catheter or do a revision to the procedure are always a possibility for the rest of his life.
We know that for the next few months at least we are taking things one day at a time. If at ANY point we notice things that are troubling like loss of verbal skills (goes from talking one day to not being able to talk the next) or suddenly seems lethargic and responds less verbally or to verbal requests we have to get him back to the hospital immediately. These are all signs that something may have gone wrong and he needs immediate attention by the neurosurgery team.
Last week I had a conversation with one of the nurse practitioners in the neurosurgery department after Alvin gave us a scare the night before. She said Alvin was one of the kiddos that scared them. His hydrocephalus was diagnosed much later than some and if his fluid pathway is blocked and the pressure starts to build up again we won’t know what it is going to look like. For him it could present in a number of ways so anytime we have a concern we should keep an extra close eye on him and possibly get him to the ER at Seattle Children’s so that he can be evaluated and effectively treated by the neurosurgery team.
The worst part of all of this for at least the next few months we cannot continue with many of the activities where he is around groups of normal 4 to 5 year olds. Things like playgrounds are allowed only if there is no equipment he can fall off of. Gymnastics and socializing in a structured environment with normal kids is all on hold due to the fall hazards and the possibility of his head splitting open if he rolls on it too much. All we can do is keep home life the same and treat him as much as possible like any other kid his age. We can still go on outings and do all of the other things that we normally do but we have to be extra careful of his actions for the next few months.
So this is what we are dealing with. It’s an adjustment for all of us and is definitely taking time to get used to. Here soon though things will begin to take on a new normal for us and we will gradually learn to accept the new challenges the hydrocephalus diagnosis has presented to Alvin and all of us.